The Defeat Autism Now! Conference was last weekend and the big news was not that Jenny McCarthy showed up, but that the American Academy of Pediatrics showed up.
After years of inaction and obfuscation, this was action number two taken by the AAP in just one week.
AAP not only showed up, from what I can put together, they really listened. They saw that the doctors presenting were their doctors and that the families in the audience were their patients. They got that the research and the interventions had a solid base and that medical approach to treating what is currently diagnosed as ‘autism’ has already begun with out them. They got that it is time for them to begin investing in what we have started.
I hear that they understand the multisystem failure that is going on in our kids and the multi system approach that is needed to address it.
I think they got a taste of how wrong it has been that parents complaints to, and questions of, doctors have been treated with such hostility, and that doctors who spoke up for our children were ostracized.
… and I got the feeling that they might even have been a little impressed with the way that our community has taken back an entire arena of medicine from drug companies and insurance companies and hospital systems and all other things big medicine.
The first step in building bridges, real relationships, is to show up and listen. They have done that.
But now comes the hard part for the AAP… what to do with that information. They know it is real, they know that we are on the level, and they know that the treatments are working. Can they take that and do what really needs to be done, no matter where the trail leads?
Are they ready to announce that vaccines are the big trigger? I don’t think so. I would be surprised if they were ready to do that yet. Vaccination changed their profession dramatically, and for the better, and to come to terms with the fact that it has crossed the line and gone too far… to admit out loud that they have caused so much damage… that will be very difficult. Not just for the AAP body as a whole, but for each individual pediatrician.
Are they ready to start participating in real research with us? I think they very well might be on treatment options, but good vaccine research, a real vaccinated vs. unvaccinated study? That is the million dollar question.
In this Age of Autism (to borrow from Dan Olmsted), where parents like me have been burned and burned hard, action talks and bullshit walks. We watch every move that docs make and judge carefully who is really looking out for the best interests of our vulnerable children, and who is looking out for their own interests.
I have, in no way, hidden my contempt for the actions of the AAP over the last decade for what they have and have not done in the autism epidemic, and for the potential disaster that will take place if in fact David Tayloe does take charge of this body.
But the current leadership of the AAP has gotten my attention with their actions in the last week. I think that they are in a rare moment in time where a state of flux is occurring, and there is a possibility of them turning a corner and making a real attempt to redeem themselves.
Voices that are usually squelched are being heard.
I think this is a fragile window. Failing to continue to move forward with real action, and assuming that reverting to bullshit public statements will placate autism moms and dads, would start closing that window quickly. The reign of David Tayloe would kill it stone dead.
I have a few words of advice for the AAP if they are concerned with stopping the slide of public trust and keeping the vaccine program from crumbling:
1. Say goodbye to your ego.
If you got into this business to be treated like the big guy and want to stay the big guy, then you will only get in the way of bringing our children back. If you can get past yourself, you will start to see beautiful stories of healing in families that have been devastated. You have the chance to become a part of something amazing that is happening in families who were told that their child was no longer functional and should be put away. Choose to see life return even at the expense of your pride (and your Mercedes and your vacations).
2. Tell the truth, the whole truth and nothing but the truth. No matter what happens, no matter the fall out, no matter the shame. You have one chance here to clean out the cancer that is the lies that have been told to American parents by the CDC about vaccine safety. If you take this time to CYA, then you won’t get another chance.
3. Find a nice, dignified excuse to set David Tayloe aside as the next AAP president and choose someone of integrity and character like Jay Gordon who will treat vaccine injury with seriousness and the intricacies human body with humility. I personally won’t listen to any doctor who listens to David Tayloe.
4. Actually participate in real vaccine debate. When what passes for a debate only includes those whose livelihood depends on vaccination continuing, it is not a real debate.
What has been referred to as the ‘vaccine debate’ for the last four years since the IOM decision has looked like this: A panel of doctors from the CDC, AAP, IOM, NIH, HHS having mutual admiration society catered by GSK while congratulating themselves on eradicating polio and rubella, inside a building owned by a hospital that is owned by an insurance company that is owned by Merck, while parents and the doctors who listen to them and heal their children are locked outside banging on the door trying to get in.
None of the parents’ points, complaints or questions are addressed, and if one does manage to get in, she is told to sit down or is escorted from the building.
Registered nurse, Lyn Redwood, one of the first mercury moms, a very smart, dignified and soft spoken woman who had testified before congress, when attending a CDC public meeting, asked why the committee would not state a preference for pregnant women to get thimerosal free vaccines. She was told to sit down.
When CDC held a press conference on vaccines in 2005, we went to the HHS building in DC, but weren’t allowed in the room to ask questions. Parents were escorted to a ‘holding area’ with a TV so we could watch it remotely. Lyn was there with us.
Later, we tried to talk directly to pediatricians. Generation Rescue, a brand new organization at the time, rented a booth at the 2005 AAP convention in DC, and Lyn and her husband, physician Tommy Redwood, were among the parents there to share with your doctors.
Our message was printed on a large banner that stretched across the back of the room, “Autism is Preventable and Treatable”. When we arrived, The Redwoods, along with other parents who had been raising valid and responsible questions about the vaccine program, were prevented by security from entering the building to work at the booth.
The most heart breaking thing about that fear based, controlling decision, was that Lyn’s recovered son was also turned away from the building. His name was actually printed on the list given to us as to who would not be allowed to man the booth. Pediatricians from around the world had a chance to meet and interact with a recovered child face to face three years ago. The pictures I brought of Chandler were paltry replacement for a real live talking boy, but you locked him out.
If you want to build faith with us, then a good sign that you are ready to take responsibility for your actions would be to apologize to the "DC 7" Scott Bono, Laura Bono, Lyn Redwood, Tommy Redwood MD, Will Redwood (now 14 years old), Wendy Fournier and John Gilmore.
And then continue the REAL vaccine/autism debate that begun on Larry King last week. Get a hall in DC, a really big one, and let’s face each other and slog through all the research and records and deal with this. You are gonna get yelled at, just like Jenny yelled at Karp, you are gonna see a lot of tears, you are going to have to eat a lot of crow and it will all be on the record. But that is what it is going to take to put humpty dumpty back together.
5. Apologize for harming our children, not treating the injury and not listening to parents when they tried to tell you about vaccine regression and recovery.
We know that you were lied to. We know that you have to depend on the CDC to give you guidance. We know that they have orchestrated this nightmare charade.
But you did not meet your ethical obligations to proof them. Your leadership continues to hold out crap studies like Verstaeten, Denmark and Fombonne to disprove the vaccine autism link. You need to remove your stamp of approval from them, admit that they don’t prove what people have claimed that they prove, and join us in asking that they be retracted. If you do that there is still a chance to salvage something.
You have serious culpability here, but we know that you are not the source of the big lie.
6. Clean up this mess. Take action now. If you try to play the ‘death by committee’ game like the IOM did, parents will start tuning you out at the first mention of the words ‘task force’.
You have to start with this: Autism treatment is not a top down operation like other approaches to defeating an illness you are used to. If you could have understood it the way we have illnesses like rubella, you would have by now. If it could be tackled the way HIV was, then the Autism Speaks modus operandi would have yielded results, but it hasn’t.
Autism, or ‘Autisms’ as successful practitioners have come to define it, is not one thing, and is extremely complicated. So you can’t start with the ‘disease’ and then apply lessons to the child. You have to start with the individual child to get to the ‘disease’
It is a varied syndrome and our kids pick a la cart from a long list of physical problems.
Get a copy of Bryan Jepson’s book, Changing the Course of Autism in the hands of every one of your members.
Tell them to call their patients who are diagnosed with autism into the office for a long sit down to find out what parents have been trying with them, what is working and what is not. Have them listen to the child’s whole story, a COMPLETE history of all that has happened since before conception. They will learn huge amounts of information doing this.
Walk into the DAN! docs offices and start putting eyeballs on our kids. Physically examine them and start testing.
Get DAN! docs to hold training sessions all over the country for AAP members.
Invite local parents to speak to your pediatricians and tell them what they know. We are not doctors but we are experts on our children.
(You wanna be really smart? Do what the smart DAN! docs do. Encourage your docs to find the brightest autism mom in town who is treating her child, the one that the other mom’s call with questions, and hire her as their research assistant and parent liaison. They are plowing through the research every day, they live in an autism lab, and they talk to all the other researcher moms every day.
They are expert medical investigators.
Take advantage of them.)
And when your members start reporting the things that they are seeing to you, listen to them and coordinate that information.
Bottom up, bottom up, bottom up.
7. What ever you do, you better do it with the doctors we already trust.
8. What ever you do, go where the results are. Your work towards recovering our kids should not include learning from people who have not contributed to the recovery of a child with autism. Look for the people who are bringing children back and find out what they are doing.
And if you give people who still aren’t sure that there is even an actual increase in the rate a seat at the table, you will just be wasting our time. This is about discussion and cooperation that leads to action, not pontificating and lecturing in order to hear yourself talk. If they are interested in genetics or counting heads, then leave them to their business. Their business is not the business of treatment, and this is about treatment.
9. Whatever you do, you have to offer total and complete transparency about everything.
10. And whatever you do, please understand, you have to do it fast.
With our autistic children, we have a window of time, starting when their injury happens, to heal them. That clock starts the minute we get a diagnosis and we work like madmen to heal our children before that window begins to close.
Now you are in our shoes. You have been given the diagnosis, that parents were right and that you have lost them. You have a window of opportunity to heal that broken relationship before that window starts to come down hard and fast.
I hope you understand that you have to work smart, work quick and work from our organizational model, not yours, to keep that window from slamming shut on you.
And I hope you understand that the window will start falling hard and fast on June 4th.
Because if you are not with us in Washington, we will know that what you have done this week is bullshit.
UPDATE: Katie Wright comments:
"It was great that the AAP finally showed to a DAN! conference. Jenny McCarthy had to shame them into it, but it is good they came. Dr. Cooper did not just walk in and out he sat through several presentations over three days. I told Dr. Cooper that the AAP needs to get up to speed- NOW. There is no time to waste, they need to send TEAMS of physicians to DAN! and Autism One. If they want to start earning the respect, rather than the ire of the parent community, the AAP should start booking those hotel rooms in Chicago now. They can also make inexpensive and easy changes by updating the website so their autism information can reflect 2008, not 1998. The AAP has much to prove to our families, let's hope they take on this challenge."